A Blog For Those Getting Used To Life With A Stoma

Category: Contributors Posts

I don’t know the exact point in my exposure to Instagram famous gym-bros, superhero
movie beefcakes and topless models in perfume adverts that I decided this, but it did
happen and it controls my life to a shameful degree.

My current “body goals” involve adding 10kg of muscle and reducing my body fat to 8% (it is around 13%). To do this I’m lifting weights 4 times a week, lightly exercising on an empty stomach in the morning every day and doing ab workouts twice a week. I’m also attempting (and failing) to stick to a strict only natural diet that excludes any processed foods from being consumed. If I do adhere to this I know that in 2 to 3 months time I will have achieved these goals. But in all honesty what is the point? It is insanely time consuming, expensive to eat the amount of high quality food I need to bulk and no fun at all. How did I get in this state of irrational aesthetic obsession?

Since very early childhood my idea of what a ‘man’ looks like has been shaped by the media. As a pretty typical boy I was sucked into TV shows like Power Rangers and played with Action Man and Star Wars action figures, my favourite Disney movie was Hercules. All of my ‘heroes’ and role models were characters that were exceptionally muscular. This belief that muscles equalled hero continued to be reinforced as I grew up and started watching action movies; X-Men, 300, Batman begins. Most superheroes have incredible bodies and the genre is more popular than ever.

Around the same time as this new cascade of musclebound heroes began to form my
ideals, I hit puberty and started to become interested in girls. Of course, being shallow and 12 years old, I believed that girls (who were also shallow and 12) were only really attracted to boy band guys with abs; we were all bouncing the same lie we’d been sold back and forth off each other till everyone internalised it. Consequentially 12 year old me ended up doing 15 press-ups and 30 sit-ups a night before going to bed. How utterly ridiculous. It did work slightly, I got a faint 4-pack and at 13 I changed my Bebo profile picture to me topless with a dog tag necklace round my neck. I can assure you, categorically, 100%, no doubt at all, that this did fuck all to help me attract girls. In fact it definitely did more damage than good.

Bebo’s popularity soon died after that and I forgot my login details, so that picture is still
there for all to see. It’s horrific. I wasn’t particularly hindered with body issues for the next few years, though worried about my ‘lankiness’ (I was 6ft at 13) I was assured by others that I would fill out as I got older.

Well, I did get older and to my great dismay woke up on my 18th birthday not looking like a Men’s Health cover model. A few months later I broke up with my girlfriend of 2 years and this is when I really began to focus on the body issues again. Looking around on Instagram it was easy to see that the guys who warranted millions of followers were insanely buff. Newly single I wanted to get absolutely ripped in the hope my life would turn into some sort of sexist Lynx commercial with supermodels falling from the sky to clamour over me.

Fast forward to the present day and I have the body that 13 year old me always wanted, however I don’t want it anymore, I don’t think it’s good enough. Becoming entrenched in the gym fanatic world I’m now pursuing an even more extreme ideal and I imagine if I get there the goal posts will move again. It can be argued that being a gym rat and focusing on your diet is healthy in the long run but there is not even the tiniest part of me that is doing this for health reasons. It pains me to say it but multiple times a day I will walk into the spare room where there is good lighting and take my top off to check out my progress. I criticize everything at a level that no-one else would, questioning if I have the right ratio of armpit hair, whether or not my shoulders are level. I even waxed my chest and stomach once and it came out in loads of spots. I waste far too much of my life altering my body to please others. In all honesty having a ‘good’ body probably adds up to 20% of any of the success I’ve had with women over my life and If I’d spent as much time making my personality shine as I had obsessively watching workout videos on YouTube I might be dating the girl of my dreams. Ironically the girl of my dreams wouldn’t care if my body fat percentage was single digits.

It’s semi-comforting but more upsetting to know that I am not alone in my insecurities.
Studies have shown that 63% of men think that their arms or chest are not muscular enough 1 and I would wager that the number is on the rise. Multiple times in recent years I have not gone out, or I have planned my entire day around exercise and I’m pretty sure I’ve missed out on some great life experiences and opportunities because of it. It’s a silly way to improve your life because no good story ever started with ‘This one time I was deadlifting in the gym…’

That being said I will still wake-up tomorrow morning for my fasted jog and drink a protein shake for breakfast. Sigh.

Hattie has been doing a great job of raising awareness of IBD and life with a stoma and I’m very grateful to be invited to write a post for her blog. Those that have read her posts will know that she’s recently made the decision to go ahead with reversal surgery. Given that she has been talking about reversal surgery (including the possibility of a j-pouch), I thought that it might be useful to talk about my experience with what is unfortunately a failed j-pouch.

I had emergency surgery for UC in December 2012 and was given a temporary stoma. Keeping my rectum wasn’t an option so I had the choice of making the stoma permanent or going for a j-pouch. To an extent, I felt like I was on a conveyer belt and it was a given that I would have j-pouch surgery. I obviously did give it some thought and consider whether keeping the stoma would be best, but I had pretty much made my mind up as I was being rolled in for the emergency sub-total colectomy. My j-pouch was created in June 2013 and connected in September 2013 (on Friday 13th!). The first two or three weeks with it went really well, better than expected. Unfortunately it went downhill from there. I suffered what was apparently a huge anal fissure and with very acidic output passing over it about seven or eight times a day I was in a lot of pain. After throwing a lot of different creams at it and two rounds of botox injections (I never expected that I’d have botox there!) it finally healed. It then became apparent that my output was unusually acidic and meant that I was in pain most of the time (not just when I went to the toilet). I would grimace my way through work, rush home to sit in a luke-warm bath and take codeine and tramadol to try and ease the pain. I was getting really frustrated as I just wanted to get on with my life. After nine months, I chose to go back to a stoma and to make it permanent. It turns out that was the right choice for me. Apart from a blip, when I needed to get the stoma revised, I’ve been feeling so much better and finally feel like I have my life back. My surgeon was somewhat baffled as to my experience and thinks the problem with my output may have been caused by my body chemistry being altered by chemotherapy that I had about 10 years ago (unrelated to my IBD issues). Hopefully, therefore, it isn’t an issue that many people will experience.

It might sound like this is all doom and gloom, but it’s really not. I’m very happy with where I am now. Plus, I would make exactly the same choices again (unless of course I had a crystal ball that told me the j-pouch wasn’t going to work out). After all, the numbers are on your side – the majority of j-pouches work, and work well. What I really want to do is highlight some of the issues that I found important when making my decisions in case it helps others.

First and foremost, make sure that you are happy with your surgeon and nurses. You are literally putting your life in their hands and you need to have utmost trust that they are both very good at their job and understand what you are trying to achieve. My surgeon is excellent and I am so lucky to have found him. What I really appreciate is that when I go to see him he asks if I have got back into running again – he realises that he’s there to not just make sure I live, but to make sure that I can enjoy my life in the same way that I did before I became ill. Also, don’t ever worry about asking to see another doctor for a second opinion. Despite the fact that I really admire my surgeon, I went for one. If they’re acting professionally and have faith in their own ability, they should not have a problem with it. In fact, they may well welcome another point of view, which was the case in my situation.

I found it particularly helpful to keep a diary to track what I had eaten, what I had done during the day and how much pain I was in. I used a traffic light system for pain. When I was having significantly more red and amber days it made me realise that, despite the optimism that might accompany a green day, reverting to a permanent stoma really was the best decision for me.

When you go to see your surgeon go armed with a list of questions. Write them down, because you will inevitably forget some otherwise. Don’t worry about taking up their time asking all the questions you need. You need to understand what is happening with your body and what the best way forward is in your circumstances. I’d also recommend taking notes at your appointment so that you remember everything that is said. There will be times when you’ll want to read over them to help you understand your options and the process. There is a lot to take in in a relatively short time.

Buy some Calmoseptine. Actually, buy lots of it. You can get it shipped from the U.S. using Amazon. The stuff is brilliant and really helps with burning down there – I wouldn’t have survived the nine months with my j-pouch without it.

Make sure your family and friends know what you’re going through. I did my best to put on a brave face, but it really does help if they understand what is going on. We all need support at times.

What is the difference between underweight and overweight? It’s a harder question than one might think. The constant struggle with changing the number that lies on the scales. Monitoring what you eating and managing quantities. Trawling through the Internet and books, desperate to find a diet that works and maintaining a strict regime. All of this to find that the little red line hasn’t moved a smidgen since you last clambered onto the scales. I’d say, one of the only differences between underweight and overweight, is the number that is trying to be altered. But the most profound difference is the perception of both within society.

When I was seven years old, it was made clear to me that if you didn’t look the right way, you wouldn’t be accepted. I was ridiculed for being fat, merely because I didn’t have a flat stomach. Even though I knew full well I wasn’t fat, the words lingered at the back of my mind. Gradually, I ate less and less. Skipping breakfast here and there and ‘forgetting’ to have lunch. This was at its worst about six years ago. My parents knew I wasn’t eating, so I’d have to try and make it seem as though I was. I’d put small amounts of cereal and milk in a bowl and leave it by the sink. I’d prepare a lunch for myself then throw it away on my two mile journey to school. The only meal I couldn’t get away from was dinner. But then my mindset changed after having the consequences of my foolish actions. Over a three year period, I was continuously ill. And with being asthmatic as well, it made me incredibly weak to the point where I’d have faint spells. It was a horrid cycle that I had gotten myself into. So I changed everything. I ate all of my meals, gradually increasing portion sizes. It has been difficult getting into a proper routine and finishing meals. But I have been successful in doing so the past two years. I still get ill from time to time and feel faint. But it’s nowhere near as bad as it was.

But there’s still a problem – there’s no reward. I eat masses of food now, but my weight doesn’t change. And at sixteen years old, I’ve never weighed more than 8 stone. And I’m still scrutinized for the way I look. Many times have I been told that I’m horribly skinny, I’m stick thin, and my personal favourite – I need to eat more. Though, I’m more than certain that if I did, I’d most probably explode! But what if I was in the opposite situation? What if I was overweight? The majority of people would say that it’s beautiful to be curvy and it’s ‘real beauty’. They wouldn’t dare say that I needed to eat a salad!

It seems that in the near ten years since this all started for me, things have changed and you’re able to embrace your body – but not if you’re skinny. Thin shaming is now what fat shaming was then. If you’re skinny, you have to do something about it because it’s repulsive for other people to see. But the thing is, it’s just as difficult to fulfil what society demands you to look like now as it was ten years ago. And these demands will inevitably change in the next ten years too. So what is the point in going to extremes and putting yourself in dangerous situations, just to achieve what will only momentarily be ‘right’. For the pleasure and satisfaction of other people? That doesn’t matter. The only person you should change your body for is yourself. As long as you’re healthy, you can look whatever way you wish. Because the beauty that will never change in demand of others is the person you are, not the body you are. It shouldn’t define you. I just wish that I had known that sooner, and saved myself all of the trouble.

Change can be a scary thing. Change can be positive. It can also be negative. Change can be the seasons. Change can be choosing to do your hair differently just because. It can be because you feel you have to. Change can be tiny, or it can be huge. Change can separate who has been there for you all along, and who never really was. Change is a risk. It can petrify you more than you ever thought possible. Change can be through choice. Change can make you or break you. Change can be the day turning to night, or the sun bringing illumination to the darkness on a new day. Each day is a chance to change. Most of all through my experiences, I have learnt that change can sometimes be a one-way journey despite how petrified you are. In this sense, change is inevitable and has to be embraced, before what is the present becomes no more and is the difference between waking to see a new day or not.

Just over three and a half years ago now I had my surgery. People say that in time things get easier. I agree, or at least, things seem to get easier. Maybe this is because we learn to adapt more and learn that we must make the changes to move forward and progress. I am certainly not the type to admit defeat, but change sometimes in many aspects of life can make you feel like you are really taking on more than you can deal with and sometimes makes you want to hide in bed, wrapped tightly under the covers, in the hope that time will slow down and somehow things will not seem as daunting.

I sit and reflect on the last few years and see just how far I have come and the things I have achieved. I have taught myself to tolerate food properly again and managed to keep food consistent, although sometimes this can still be harder mentally than it seems. I can enjoy food again, and have that bag of sweets if I feel like it and not dread that pain will follow. Some foods I have to avoid, but this is a huge improvement on not being able to tolerate anything. I have visited many places that would not have been possible before. I have stood in the shower for longer than necessary just to keep warm, but for this time through choice, not because I dread getting out because the slightest bit of cold gave me crippling stomach pain and I did not know how much longer I could stand from being so weak. I have learnt a lot about my body although I am still learning when to know when enough is enough and listen to my body, but maybe that is just because I’m stubborn (and maybe a little stupid!). I have managed the last few years without any maintenance medication or steroids; besides anti-depressants and my pill I am medication-free. These are just a few of the things I could mention which I find in themselves a big achievement.

Physically, I have had to adapt to the changes inside my body and outside. I have found the biggest challenge for me to be the physical changes. Even now, I sometimes get my down days or moments where things run through my head about what it would be like to not have a permanent ostomy bag, and I wish I was “normal”, but then I wonder, what exactly does define “normal?”. I still sometimes have to shake my mindset away from just seeing my scar and bag when I look in the mirror, and remind myself that I am more than what my surgery has meant for me. I sometimes feel disgusting and worried if I have to explain to somebody new to me about my bag, but regardless of how I feel and how anxious I get and upset sometimes, why really should I feel disgusting? I am more than an ostomy bag and a scar, I am a person, and that does not define who I am. I have to tell myself that over and over some days. I see so many models and people in the media that make me feel so insecure because of how my body has changed, but then again I think the media is hugely responsible for a lot of our insecurities today in society. Ostomy bag or no ostomy bag I think this would still be the same. So many of us feel we have to live up to the ‘standards’ set by the media and all the airbrushed photographs that make people feel like that is how people actually are in reality; that that is somehow ‘perfect’. I see so many models with flat, toned stomachs with no scars or an ostomy bag and part of me inside cries to be like that, because I do not see how how I am could be portrayed as beautiful, but then I just ask myself, what is beauty? Beauty to me has many senses. But things that help to define beauty are the stories behind the people, the challenges people have faced and overcome, eyes that have cried many tears yet people still manage to put on a smile, the battle scars, the courage, the determination and the bravery. Beauty is not just about what is straight in front of our eyes at first glance. Everybody has a story. Everybody has a unique story, that has shaped them into that person they have become.

I still struggle with sitting in a quiet classroom with other people, or talking one-to-one with somebody at work and worrying about my stoma making a noise. It gives me clammy hands and makes me tense up the second I feel my stoma needing to pass wind, and I automatically go to shield what noise I can by placing my arm over my stoma. It gets me down some days that I still struggle with narrowings and I have to dilate my stoma twice a day. It makes me sad when I’m having one of those days that I cannot wear tight fit dresses without having to be more cautious about how fast my bag is filling up to stop the over obvious ‘bag bulge’ appearing like I’m pregnant on one side of my stomach. I struggle with my depression sometimes, I would not wish it on anyone. I struggle with getting my head around sharing a bed with someone and my bowel relaxing and becoming really active when I sleep and being really noisy. I struggle with the idea of sharing a bed with someone then waking up in the morning for cuddles with them and them putting their arm around me and bam! there’s this full bag of wind and waste on my stoma like a small balloon… really does not make me feel in the slightest bit attractive. Intimacy does bother me in that sense, the thought of suddenly having to empty my bag or having to attend to a leak on the odd chance it happens. I just have to remind myself that I just have different plumbing now as I call it, and that even the Queen uses the toilet and farts and no, it does not smell of roses! I guess as far as friendships and relationships are concerned, then as I have always told others, if somebody cannot learn to love and accept me for the person I am just because I pass waste out of my body differently, then they are not worth the time or space, and karma someday may visit them. All that being said, I am very lucky to have met those close to me at the moment that do make me feel beautiful, special and appreciated and have opened my eyes to being able to smile and laugh about having an ostomy bag and the little dramas that come with it! I would not deny somebody of being accepted and loved for the person they are just because they are “different” and have had to go through a whole load of crap (no pun intended!).

This post just shows that even three and a half years after my surgery, it is still a journey for me that I am not 100% comfortable with and that I am still learning about it and how to adapt in many aspects of my life. But what it does also show is that I am here to embrace it as best as I can. If it wasn’t for my bag then I would not be breathing or writing this now. I can do so many things now that I could not do for the majority of my life. I do not remember anything of my childhood besides being poorly, so surely the fact that my bag has given me my life means that I can try the best I can to make something truly incredible of my adulthood and work hard now I have the ability to keep pushing myself. I have a job that I love in a career that is so promising and rewarding that I would not have even had the energy for before. I go to college and do exams that I would not have been able to sit through before without running to the toilet or feeling too faint. I can do so many things that I could not have done before. That in itself is a gift – having my life.